The experience of living with HIV

The Australian Research Centre in Sex, Health and Society (ARCSHS) conducts a national study, HIV Futures. This is an ongoing program of social research focusing on the experience of living with HIV, to help increase understanding of the issues affecting people living with HIV.

The HIV Futures study surveys approximately 1,100 HIV-positive Australians every two years. The survey questionnaire is developed in consultation with community groups and is officially supported by the National Association of People with HIV Australia (NAPWHA), the Australian Federation of AIDS Organisations (AFAO) and the Australasian Society of HIV Medicine (ASHM).

The most recent study report is HIV Futures 7: Making Positive Lives Count, published in 2013. Futures 8 is currently recruiting and a report will be released in 2016.

Of those interviewed for Futures 7:

  • 71.4% of people living with HIV rated their health as good or excellent and 62.7% rated their general wellbeing as good or excellent.
  • Just over half of respondents were currently in paid employment (58.2%), the majority of these being in full-time work (38.5% of total sample). The majority of the remainder described themselves as either not working or retired.

When asked if they had experienced any of the following conditions in the previous 12 months:

  • 80.2% reported low energy or fatigue
  • 66.8% experienced a sleep disorder
  • 41.9% experienced confusion or memory loss
  • 28.3% experienced weight loss
  • 23.9% reported experiencing lipodystrophy (changes in fat distribution).

Other findings

  • In the last six months, 27% of respondents had taken prescribed medication for depression and 28.6% for anxiety
  • 48.1% had been diagnosed with a mental illness at some time during their lives. Depression was the most commonly diagnosed mental health condition affecting 87.5% of those reporting a mental health condition, with 17.2% of these people being diagnosed in the last two years
  • Almost all had disclosed their HIV status to at least one person, generally partners, close friends and family, while 52.8% of respondents had had their HIV status disclosed to another person when they did not want it to be disclosed (25.4% in the last two years)
  • 27.6% experienced less favourable treatment because of HIV in relation to health services, 13% in the last two years. Another 7.4% experienced less favourable treatment in relation to accommodation, 2.8% in the last two years
  • 28.6% of people living with HIV lived below the poverty line
    Just under one-quarter of respondents have a partner with whom they share financial resources.

Download HIV Futures Seven